How technology enables people with multiple sclerosis to manage their condition
Nurses can help individuals with MS to get the most from the digital tools that can promote their independence
Nurse consultant Karen Vernon explains how individuals with MS can get the most from the digital tools that can promote their independence
Like everyone else, people with multiple sclerosis (MS) have had their lives changed by technology.
The ability to watch television, read, or listen to audio books on the move is now part of everyday life for many of us, along with receiving personalised recommendations from our favourite online shops. We Skype people on the other side of the world.
But technological advances in healthcare have not been as far-reaching for everyone, which is why the MS Society and Nuffield Trust have published a report looking at how data and technology can enhance care for people affected by MS.
Digital advice can reassure
The report, Improving Care for People with MS: The Potential of Data and Technology, unveils a series of proposals from healthcare, industry and technology specialists that could transform MS services and improve health outcomes for more than 100,000 people with MS in the UK.
At Salford Royal NHS Foundation Trust in Manchester, we have been on our own digital journey and I have seen the effect data and technology can have on patients. As a global digital exemplar, we have identified the thousands of people with MS in our care, as well as the treatments they are taking and how they use the service.
For GPs and nurses on the front line, better use of data and technology could also have an immediate effect – right from the first consultation. Technology offers a great way to help people with MS manage the logistics of their condition, particularly in relation to their drug therapies and general self-management advice.
A rich resource, but an overwhelming one too
The internet offers vast possibilities for patients with MS. They can use it to find information about their disease, clinical studies and new research, or prepare for a conversation with their neurologist or nurse. Apps and online health records have also shown promise as a way of helping people understand and manage their health.
But the range of advice available online can leave people feeling overwhelmed. As most apps have not been evaluated, patients and professionals don’t know if they can rely on their information.
'Voice-activated technology can help someone who has lost hand function to use a computer, answer the phone or lock the front door'
As nurses, guiding patients through the options can make a difference in increasing confidence and improving their ability to manage their condition.
How good are health apps?
There are plenty of health apps on the market, but some may do more harm than good. The report looked at the evidence for apps in four areas.
- Mobility and physical activity These can be effective but work best when used with professional guidance. A survey of people with long-term conditions found that half are willing to use an app to support physical activity.
- Pain management There are 88 apps available with most focusing on self-care skills. However, few are evidence-based or developed with healthcare professionals.
- Brain training Apps with games that test memory are popular and more than 80% of people who tried a home-based app said they would use it again.
- Depression and stress Stigma associated with mental health issues makes online support attractive. While evidence shows anxiety apps reduce depression and stress significantly, less than 4% have been tested so the challenge is making sure people access valid apps.
A means of combatting social isolation
Technologies continue to emerge that people with MS can use in their homes to improve their quality of life. Unfortunately, many people with MS won't know where to look for them, or even that they exist. But we can help.
Voice-activated technology can help those with more advanced MS maintain varying degrees of independence. For someone who has lost hand function, voice-activated technology can enable them to operate a computer, answer the phone, switch lights on or lock the front door – functions others may take for granted. The importance of being able to do these things cannot be overstated.
As well as offering practical help, the effect on a patient’s mood can be profound. The ability to contact friends, shop online or access news and social media channels can help combat social isolation.
People often want to take more control of their care, and almost everyone has the basic digital tools to do so via smartphones, tablets and computers. If we can make this easier for patients, the potential to improve aspects related to their condition is huge.
No substitute to caring professionals
Digital tools can never replace caring, knowledgeable professionals. The MS Society found technology works best as part of a broader intervention involving nurses, physiotherapists and other healthcare professionals, and augments what we do already.
Although few digital tools have been created specifically for people with MS, the MS Society is working on expanding the range and developing it with a deep understanding of patients' needs and priorities. If successful, it could put self-management within reach of many people with MS. Until then, we continue to work with what we’ve got.
Where useful technologies do exist, nurses can help by promoting them to patients who might benefit, as well as other healthcare professionals involved in their care. This helps ensure a shared understanding and encourages widespread adoption.
'Why are MS services still in the dark ages?'
Jane is in her sixties and has secondary progressive MS. ‘Technology has had a profound impact on how I manage my MS,’ she says. ‘A few years ago, I lost the ability to use my hands but I’ve been able to keep my independence because of access to new technology.
‘I operate my computer by voice control and have another system that lets me answer the phone and lock the door. Being able to participate in society should be a basic right, but sadly I fear I’m in the minority.
‘If you can get a drone to deliver a Kindle, it doesn’t make sense that MS services still feel in the dark ages,' Jane says. 'Technology can help you manage your condition and vastly improve your mood, so I hope others don’t have to wait much longer to have the benefits I’ve had.’
Like Jane, many people with MS have an expectation that healthcare should catch up and respond to how they live their lives and provide the services they need, when they need them.
Evidence of this happening at the moment is patchy, but we are in an exciting and privileged position to change that.
Karen Vernon is multiple sclerosis nurse consultant at Salford Royal NHS Foundation Trust